• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Inhibitors of the renin-angiotensin system for low flow POTS?

Emootje

Senior Member
Messages
356
Location
The Netherlands
It is very complex. I guess the only way to make sure if you are low flow is by laser-Doppler flowmetry testing.
Thanks for the sympathetic excess herbs suggestion, I will look into it.
 

ramakentesh

Senior Member
Messages
534
Actually there might be an easier way to ascertain whether you are low flow. According to one study and the article Julian Stewart wrote in the book Primer of the Autonomic System, Low flow pots is associated with low body mass index and is strongly associated with female sex.
 

ramakentesh

Senior Member
Messages
534
Also the heart rate in normal flow POTS appears lower than in low flow POTS of either ang II/NET deficiency or other origins.
 

Emootje

Senior Member
Messages
356
Location
The Netherlands
I cant seem to find the reference anywhere but stinging nettle improves NO flow mediated vasodilation.
Most of the reference values:

Active plasma renin concentration (A.P.R.C) 5 - 47 mU/l
Aldosterone 0,08 0,44 nmol/l
Noradrenaline 0,4 3,0 nmol/l
Adrenaline 0,012 - 0,20 nmol/l
Dopamine 0,02 - 0,19 nmol/l
Atrial natriuretic peptide (ANP) 9-68 ng
Natrium (Na) 135 146 mmol/l
RBF=1000 ml/min
RPF=600 ml/min
FF=20%
GFR=120 ml/min

Thanks again for your input.
 

ramakentesh

Senior Member
Messages
534
Im having trouble understanding your results. I guess what id be looking for is excessive NE and dopamine posturally versus excessive ang II and reduced renin/aldosterone responses to orthostatic stress. Dont know how saline infusions would effect this but it might actually improve the postural results.

Do you feel heaps better on saline? midodrine, etc?
 

Emootje

Senior Member
Messages
356
Location
The Netherlands
I made some typo's in the previous version, so here is the new version:
View attachment Uitslagen de Leeuw 2.pdf

The results shows my hormones in supine position. One day they increased my plasma volume with an albumine IV and the other day they increased my plasma volume with a saline IV. You can see my renin, aldosterone, noradrenaline and renal parameters improve after volume expansion. This improvement was only a short-term effect....
 

pine108kell

Senior Member
Messages
146
I don't have the patience of focus to read these kinds of posts anymore, but was curious if the blood pressure medicine Benicar is one of the drugs that might have benefits for POTS/OI. The reason I asked is because, as some may recall, the so-called "Marshall protocol, which was over-promoted a few years back used that drug (for a completely different purpose). Anyway, I felt much better on the Benicar, at least for a few days and noticed my OI symptoms greatly diminished. And my bp didn't go down at all on this drug that was supposed to lower bp. I apologize if this has nothing to do with this post--can't keep up with all this medical stuff anymore.
 

ramakentesh

Senior Member
Messages
534
yes it works the same way as Losartan. Many POTS patients are now being prescribed these medications and they do seem to help. ARBs. Have you had your angiotensin II levels checked? Quest do it now days and it may be worthwhile.

An EM - Dan Shen or Salvia miltiorrhiza is a potent angiotensin II receptor antagonist if you have trouble getting a script. Good luck!
 
Messages
15,786
My body mass index is normal (21) and I'm a male...
If you are interested, I've got some lab results from 2001:
View attachment 6628
My plasma volume back then: 40 ml/kg (normal 48 ml/kg)

I'm in the Netherlands too, and trying to get my Orthostatic Intolerance examined. So far it's been a bit of a farce with the Lelystad Vermoeidheidcentrum telling me to go to the GP for it, and the GP saying it's an ME problem and the fatigue center should deal with it. The fatigue center has an internist now that seems very new to dealing with ME, and used Holmes and Fukuda to diagnose me, even though their own website says they use the CCC. The other internist, Dr Wester, has retired.

So after my GP couldn't get the internist on the phone, I emailed the fatigue center referencing NMH in a Dutch copy of the CCC on their own site. They're supposedly going to make an appointment for me now, but that hasn't happened yet, and I'm not sure they even know what NMH, POTS, or OI is.

So my question is: how did you arrange to get tested for your plasma volume and other possible causes of orthostatic intolerance?
 

Emootje

Senior Member
Messages
356
Location
The Netherlands
The hormones and blood volume determination were done by prof P.W. de Leeuw (Maastricht Universitair Medisch Centrum). I wrote him a letter and he was kind enough to see me. He did some great tests but could not figure out why I'm hypovolemic.

Dr. Wieling (AMC) and dr. Vermeulen are some other options (I have no personal experience with dr Wieling).

Wieling:
http://www.ncbi.nlm.nih.gov/pubmed?term="Wieling W"[Author]

Vermeulen:
Dr. Vermeulen (CVS centrum Amsterdam) is currently testing some ME/CFS patients for low blood volume.

And some hospitals where you can determine your blood volume:
http://www.jeroenboschziekenhuis.nl/website/patientenfolders/LNG/LNG-018.pdf
http://www.sszog.nl/uploads/documents/Bloedvolumemeting.pdf
http://www.sazinon.nl/folders/fld nucl 004.pdf
http://www.asz.nl/files/file.php5?id=27
http://www.adrz.nl/patienten/specialismen/nucleaire-geneeskunde
http://www.mmc.nl/patienten/patienteninformatie/folders_voor_patienten/nucleaire_geneeskunde_folders
 

pine108kell

Senior Member
Messages
146
yes it works the same way as Losartan. Many POTS patients are now being prescribed these medications and they do seem to help. ARBs. Have you had your angiotensin II levels checked? Quest do it now days and it may be worthwhile.

An EM - Dan Shen or Salvia miltiorrhiza is a potent angiotensin II receptor antagonist if you have trouble getting a script. Good luck!

Interesting, thanks. Would a typical doctor ever think to measure angiotensin II levels in a patient that does not present with high BP or am I going to have to bring in lots of literature and do arm twisting?
 

ramakentesh

Senior Member
Messages
534
I have had a positive response to mestonin. Talking to my doctor what I found interesting was that he said many of his suspected autoimmune POTs cases are hyper rather than obviously neuropathic. he thinks that there may be other autoantibody mediated issues in POTS other than just acetylcholine receptors.
Further, mestonin also improves baroreflex sensitivity so could help anyone with POTS really.

I forgot to mention i have had pupil disfunction and ptosis during POTS episodes.

other potential targets for an autoimmune process could be beta 1, beta 2 activationg or blocking, ang Ii receptors, NET, ace2.
 

ramakentesh

Senior Member
Messages
534
I have had a positive response to mestonin. Talking to my doctor what I found interesting was that he said many of his suspected autoimmune POTs cases are hyper rather than obviously neuropathic. he thinks that there may be other autoantibody mediated issues in POTS other than just acetylcholine receptors.
Further, mestonin also improves baroreflex sensitivity so could help anyone with POTS really.

I forgot to mention i have had pupil disfunction and ptosis during POTS episodes.

other potential targets for an autoimmune process could be beta 1, beta 2 activationg or blocking, ang Ii receptors, NET, ace2.